New research exposes inequities in care and support for terminally ill

Marie Curie calls for radical rethink in care

Front-line clinicians say lack of coordination between teams delivering care, insufficient funding for services and time-poor staff are barriers to meeting the needs of people with a terminal illness[¹], according to a new survey commissioned by Marie Curie, the leading charity for people living with terminal illnesses.

500 clinical professionals across the UK also reveal that a shortage of specialist palliative care services and difficulty of accessing social care are also barriers to meeting the needs of people with a terminal illness[²]. 

The new Ipsos MORI online survey, which explores perceptions among a sample of 500 clinical professionals of the standards and quality of care that they encounter for those with terminal illnesses, also shows contrasting opinions about the level of care provided in different care settings.  

• While 53% of respondents agree that the needs of patients are adequately met overall, far fewer agree that the same is true for those using out-of-hours social care (15%) or in accident & emergency (15%).   
• Only a third of respondents (31%) agree that out-of-hours medical care met peoples’ needs adequately, while 45% agree the same was true for hospital in-patients.
• A larger proportion agree that people receiving care in their own homes or in hospices have their needs met – 53% and 91% respectively agree that those needs are adequately met.

These perceptions also reflect the views of carers. In a recent survey of 1,067 carers in the UK, seven out of 10 (68%) said that people with terminal illnesses don’t get all the care and support they need.

With the health and social care system already stretched and facing the unprecedented demands of an ageing population, clinicians were asked to indicate in terms of importance what needed to happen to improve the quality of care for those with a terminal illness, (giving a score from one to 10, where one means not at all important and 10 means it is very important).  The key priorities (given a score of 8 to 10) were:

• Improved co-ordination of care between health and social care, with nearly four in five (79%)
• Improved co-ordination of care between acute and community care providers (77%).
• Better planning of social services (73%)
• Followed closely by better planning of health services for people with terminal illnesses (69%) and better communication between healthcare professionals and people with terminal illness and their families (68%)

As shown today in a new report from the Personal Social Service Research Unit at the London School of Economics and Political Science (LSE), commissioned by Marie Curie, there are also serious inequities in terms of who receives the right care and who doesn’t.  

The researchers uncovered compelling evidence that showed that where people live, the condition they have, their age, and their ethnic background can play a role in the quality of care they experience.  In reality, this means that if you have a terminal condition other than cancer, are from a black, Asian or minority ethnic background, live in particular parts of the UK; are single or live alone, or are over 85 years old can impact on how likely you are to access the right care or affect your family’s views of the quality of care you receive.

The LSE team also highlighted that considerable under-provision and service gaps currently exist, and that these will grow as the UK population ages - resulting in an even greater need for end of life care services.  Research by the LSE and others suggests that investment in palliative care services in the community is cost-effective, though might involve some additional start-up costs. The LSE has also estimated that providing palliative care to those who need it could potentially generate net savings of more than £30 million in England, at least £2 million in Wales, more than £1 million in Northern Ireland and more than £4 million in Scotland.

Dr Jane Collins, Chief Executive of Marie Curie, said: “These findings do not paint a great picture for people living with a terminal illness in the UK today.  It is undeniable that many people do not get the care and support they need and everyone from medical professionals, researchers, policy-makers and those affected by terminal illness understand this.  If the current system of care is failing to deliver now, how will it cope with the demand to come?

“Our new report “Changing the Conversation” calls for a national conversation about what sort of care and support people with a terminal illness, and their families, should get now and in the future to ensure they are able to live well for as long as possible in the place of their choice – usually their own homes.  This report examines the challenges and what needs to happen to ensure that the inequities in the system are removed.” 

Dr Collins, added: "Everyone in the UK who is living with a terminal illness deserves to get the care and support they need.  There is a need for alternative models of care and capacity building – particularly in the community – to address the inequities of the current system and to meet the projected demands of the post-war, baby-boomer generation in the years to come.  If we don’t do this, we as a society will continue to fail vulnerable people at the time they need us most.

“This is an issue that affects us all and needs urgent attention. We need everyone to take part in this conversation, whether you are affected by terminal illness yourself, supporting a loved one, a health and social care professional, a service planner or a policy-maker.”  

Dr Collins, concluded: “At Marie Curie we want to do more for people affected by terminal illness and their loved ones. So, we intend to increase the number of people we care for, fund more research and work with others to improve the quality of care across the UK.  Importantly today also sees the launch of our new information and support service, to help people affected by terminal illness navigate the system, so they can get support on how to cope and get the most from the time they have left.” 

For information and support, contact the Marie Curie Support Line (0800 090 2309*), Marie Curie Community (community.mariecurie.org.uk) or mariecurie.org.uk/help.

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